Just Do It

Although daughters and daughters-in-law are identified as primary caregivers for the nation's elderly, in a growing number of cases, the daughter or daughter-in-law is absent from the family or from taking on family responsibilities. Evidence of this fact includes the growing social phenomenon of grandparents raising grandchildren. According to the 2000 U.S. census, there are 4.5 million children living in grandparent-headed households. This is a 30% increase from 1990 to 2000 and represents 6.3% of all children in the United States (AARP, 2005).

According to the U.S. 2000 census, 5.8 million grandparents live with grandchildren younger than 18 years of age. Among these grandparents, 2.4 million are "grandparent caregivers" (people who have primary responsibility for their grandchildren younger than 18). Thirty-nine percent of these grandparents have cared for their grandchildren for five or more years, and 63% of the grandparents range in age from 50 to 79 years. The table below depicts demographics of these grandparent caregivers on a national level, from the state of Virginia, and in the District of Columbia that helps to better understand this population.

It is important to note that minority grandparents are generally less informed about services and have fewer supports available, and that Spanish-speaking Hispanic and Native American grandparents are especially isolated (AARP, 2005).

There are many reasons why grandparents become the head of households for their grandchildren. The Oklahoma Survey of Responsible Relatives was a telephone survey of 664 grandparents and other nonparental relatives who are responsible for children (72.8% of the respondents were grandmothers, 12.9% were grandfathers, and 4.8% were great-grandmothers). The majority of the respondents were female, in the 30-64 age group and white. Forty-three percent of the children were in the 10-14 age group, 39% were age 5-9, and 35% were age 15-19. Most of the children were female (68%), and 27% of the children were diagnosed with mental retardation or a developmental disability. The main reasons that the responsible relatives in this study gave for becoming primary care providers included

- Parental substance abuse
- Parental criminality (including imprisonment)
- Parent's refusal or inability to care for the children
- Love or importance they give to the children

Fifteen percent of the respondents in this study at the time of caring for a child needed assistance with an instrumental activity of daily living (IADL) such as shopping, managing their money, and taking medications. Over 90% of the responsible relatives receiving help with IADLs were assisted by one of the children in their care (McAuley, 2004). Questions that arise from this study include, Will the children assisting with IADL needs continue providing care to their grandparents? Will other children raised in grandparent-headed households assume caregiving responsibilities for their grandparents if the need arises? How will the relationship between the grandparents and grandchildren be similar or different from the caregiving relationship between parents and adult children? As we see more and more grandparents caring for their grandchildren, will we begin to see a parallel trend of more grandchildren becoming the primary care providers for the frail elderly?

The literature is limited on information describing the experiences of grandchildren as caregivers to older adults. However, besides the peer-reviewed literature and national reports, evidence of the n:eed to look specifically at grandchildren as caregivers for older adults is evident from the Family Caregivers Story Project. (http://www.nfcacares.org/who/story.cfm) The National Family Caregiver Association (NFCA) received a grant from the Christopher Reeve Paralysis Foundation to support the project, which has been implemented since 2003 and is intended to give a voice to family caregivers to legislators, health-care professionals, and the media. Out of 677 family caregiving stories on the Web site, 15 of the stories are from grandchildren caring for a grandparent. Individuals who write to this site are asked for their first names, location, caregiver relationship, living arrangement, and primary illness of the care recipient; they are also asked for their wish lists relative to service needs. Below is one example from the 15 stories of grandchildren as older adult caregivers. This example was the only one in which the grandparent clearly had a significant role in raising the granddaughter.
"My name is Cindi. I am 26 and have been the primary caregiver of my 72-year-old grandmother, Luella, for the past seven years. My grandmother was diagnosed with PSP (Progressive Supranuclear Palsy) only 3 years ago, but has had the onset of the disease for over 12 years. She has taken care of me most of my life and is my best friend. So it wasn't unusual for her to want to move from Pennsylvania to North Carolina with me when I got married. I quit my job before we moved, and now stay at home and take care of her and my 9-month-old-son. Until almost 4 years ago, she could still do things for herself, such as dressing, walking and eating. Now she is unable to do anything for herself and is completely bedridden. The muscles in her limbs have atrophied to the extent that it is hard to manipulate them to even get her dressed. She has almost no voluntary muscle control, except for shutting her eyes and partially moving one arm. Luckily, she has a feeding tube in her stomach because she cannot control the muscles that open her mouth. Even though I don't mind providing care for my grandmother who I love so much, it is hard for me to find time for myself or even my husband and I to share time to ourselves. We cannot go anywhere unless we take my grandmother with us.

"Wish list: 1. Respite care for a few hours each week, so I could have time for myself or get out of the house. 2. Financial assistance for a more comfortable, reclining wheelchair. 3. Financial assistance for incontinence supplies. 4. Recognition for people who decide to take care of their loved ones instead of placing them in nursing homes and other facilities."

As the number of grandparent-headed households continue to increase in this country, what is the long-term caregiving relationship that develops between the grandchildren and the grandparents? Will the grandchildren be in a position in the life-course to become the caregivers for their grandparents? What other environmental factors may affect the relationship? What are the potential social work and other practice and policy implications? With the increase in grandparents raising grandchildren comes the issue of less available and able adult children to act as primary caregivers for their aging adult parents who may become the victims of a chronic illness, impairment, or disease. Will the grandchildren who have been raised in grandparent-headed households step up to the plate and take the place of the adult child as caregivers? What variables related to the grandparents, the grandchildren, and their environments might affect this potential relationship? What are the policy and practice implications of grandparent/grandchild caregiving interactions?

Faculty at George Mason University are beginning to explore these questions. Ten grandmothers residing in the Washington, DC/Virginia area and who are primary care providers for their granddaughters have signed up to participate in an interview that will explore the long-term relationship between the grandmothers and granddaughters. In some of the cases, the granddaughters will be interviewed as well. Stay tuned for the outcomes of this project!

References

AARP (2005). Lean On Me: Support and minority outreadh for grandparents raising grandchildren. Washington DC:AARP

McAuley, WJ (2004). Oklahoma Survey of Responsible Relatives. Final Re[ort ot Oklahoma Department of Human Services, Aging Services Division.